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I am newly diagnosed and currently out of America for a few months so out of touch with my primary HIV doc. I broke out with four spots around my anus, which the doc I found here thought looks like a potential herpes outbreak. I did have a unprotected receptive encounter about 20 days ago. Anyway - the doc was treating me with Valtrex for the herpes, when he said that he is concerned that one of the spots (the one that appeared the latest) looks like it could be syphilis, so he ordered a test.

I should say I am UD and have very high CD4 - over 1000, fully adherent.

So.....this sends me to the crazy world the websites, where I cannot seem to get a clear answer.

1. Some sites seem to say neuro-syphilis is like a "stage" of syphilis after you have had undetected syphilis for "ten or twenty years" (literal quote from a few sites.)

2. Other sites say "neuro-syphilis can appear in first stage (i.e. - within a few weeks) if you are HIV pos. But what I do not understand and of course they never explain is do they mean HIV pos but untreated? or with very high VL, or very low CD4? Or just ANYONE who is pos? And that would seem strange and they offer no explanation?

I like to think that I am as smart as the next person, but honestly, these sites write with such unclear language.

So - I am of course freaking out. This is not helped by the fact that the sites also say that fully 25% of people get a false NEGATIVE within the first 6 weeks, which is definitely the window I am in - which makes me want to just treat the hell out of it anyway.

Any perspective anyone can give at all would be very, very helpful. Any guidance would be helpful. This doc is not an STD doc and it is not a simple thing to find one where I am and I am not back to the States for another 6 weeks.

And - I have decided I am simply masturbating for the rest of my life.

Neurosyphillis refers to a long term infection. The sores and rash is an initial syphillis infection. You may clear up and never be treated for the syphillis and that will lead to neurosyphillis after some years. The symptoms of NS will be impaired speech , loss of some motor skills, vision problems, and issues with memory. In NS you won't necessarily be showing signs of syphillis like sores.

Neurosyphillis refers to a long term infection. The sores and rash is an initial syphillis infection. You may clear up and never be treated for the syphillis and that will lead to neurosyphillis after some years. The symptoms of NS will be impaired speech , loss of some motor skills, vision problems, and issues with memory. In NS you won't necessarily be showing signs of syphillis like sores.

In HIV positive people, neurosyphilis can present mere months after the initial infection. It's one of the easter eggs in the HIV program.

Happened to me.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

I have posted several times the past few days on this unfolding situation. I really, really would appreciate response from some of the more experienced people here. Thanks so much!

I am travelling out of the country in Latin America for a few months. I was DXd in May, immediately went on Atripla, and had excellent numbers. UD within 3 weeks, with CD4 of 1040. I have not missed a pill.

I had one BB receptive encounter exactly one month ago. The guy DID NOT (for sure) ejaculate inside of me, though I did notice pre-cum. About two weeks later, I started feeling what I thought were hemorrhoids. They did not go away, but got worse. Finally - a few days ago, I tracked down a clinic in the country I am in (VERY basic...). The Doc saw 4 spots, and thought that three looked very much like herpes, but one could be syphilis. The one that looked "suspect" to him is the one that appeared LAST, only several days ago, and is right at the very base of my tail bone, at the top of my but crack. I should say that this spot DID have itching and pain (because I know normally syphilis spots do not)

He put me on Valtrex and I did start to notice most itching / pain / size of the spots begin to diminish.

HOWEVER - 2 days ago - 5 days on the Valtrex - I began having very noticeable joint pain all over my body. Knees, elbows, neck, etc. The pain has not been unbearable but is getting worse, not better. And the past two nights I have had very mild night sweats. Nothing horrible - but also not imaginary.

TODAY - the first syphilis test came back negative. They are doing a more advanced test.

It's more likely to be herpes, regardless of treatment, or a n other thing, rather than superinfection. Superinfection would be a real outside chance. LGV? Possible. You need some decent diagnostics. Might of course be two things.

Why would superinfection be outside? because there was no semen? because I am on Atripla? combo?

obviously - the thing I am most concerned about is Superinfection. Do you know much about it? I swear to God - the Internet can drive you crazy. I saw two sites - both reputable - one saying that life expectancy for superinfection was THREE YEARS and another (I swear to God - and this was on a reputable site) saying that super infection boosts the immune system and HIVers do BETTER. BIZARRE.

Jk- I am sorry to hear it happened to you. Were you UD and on treatment at the time? Do you have any advice?

The syphilis test came back negative but I don't know what to do with that since it was such an early test with possible exposure only 4 weeks ago.

Of course if it is NOT syphillis then I am terrified it is some kind of hiv superinfection. Although - I am on meds w extremely high CD4s and also he did not ejaculate in me.

Any perspective or advice is welcomed.

Well, what you described does not sound like a primary syphilis chancre - they are not usually found in groups, and resemble open sores. They are painless, but they sure don't look it.

And, of course, there is no real need to worry about Superinfection. There have been maybe a dozen or two documented cases in the history of the HIV pandemic. You've got a better chance of having an airplane crash on you.

As for my situation, it was well over ten years ago, and it was a combination of events that led to my diagnosis. I was on meds, but not at all in a good head space so I was not exactly adherent, and my CD4s were rather low. But I was misdiagnosed at the clinic I atended (hard to say "misdiagnosed" when there weren't any tests at ALL run. THAT is a story worth telling sometime).

It was about four months later, when my vision and hearing started to fail, when I managed to crawl/drive/lurch to a new doctor, who did a spinal tap and gave me an IV antibody regimen that I had to wear around for ten days. That was followed by a series of painful butt shots, but they finally stopped the damage and rendered my syphilis-free. Took months for that to happen.

Steve, you are newly diagnosed, and it's totally understandable that you will freak out over every health issue and symptom. Hell, it would be odd if you didn't at first.

But you have a VERY high CD4 count and an undetectable viral load. These things make it far more likely that you picked up a far more mundane STD, though please understand that syphilis has a three month window for testing. If you are going to have unprotected sex, making certain you monitor your sexual health regularly is important. Even if you use condoms, there isn't a ZERO percent chance that you won't pick something up (which is why it's called safER sex, and not safe sex).

But these things should NOT shut down your sx life. But if you need celibate time in order t get your head wrapped around your diagnosis and treatment, gather the confidence you will need to go out and explore your sexual self, then by all means take that time.

It's great that you are adherent and responding so well to treatment. Keep that up, and the rest ought to fall into place.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Jeff - I really appreciate the response. I have heard so much of that too, but if you Google Hiv Superinfection there are a BUNCH of very new articles out which state that it IS common - far more common than thought...and that it is actually as common as infection itself....

Which leads to my questions of....well, would my Atripla at least be assisting somewhat as a prophylaxis? And if he did not cum in me - which I am sure he did not....Then it would seem the risk would be very low? But then what the hell IS this that I have?

My guess is I have two things - herpes, and then something else that is giving me increasing joint pain and mild but definitely real night sweats, with this one sore(?) that is not healing as fast as the others....

You got the treatment for herpes. So can't you get, now, where you are, the standard antibiotic treatments for chlamydia, syphilis and the clap?

If its neuro syphilis you'll need to go home for treatment, I suppose. But if its just some recent, straightforward STD that is treatable now.....

Anal chlamydia exists...

PS - stop worrying and reading about superinfection. If it exists, its certainly not a 3 year life span.. hahahaha... I guess if someone (one in million??) were to have a superinfection, it could go either way - either quickly resolved by his HAART and pre-existing virus, or I suppose in theory, a resistance. Which would be addressed by a change of combo. Not by a 3 year demise to death.....

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“From each, according to his ability; to each, according to his need” 1875 K Marx

By the way, a rule of thumb for living well with HIV. Don't fuck around with non-experts and don't stall and delay, and don't worry in ignorance.If you are sick, you need answers and treatment. Get yourself to good doctors in that country. Or consider leaving and going to where you can get the medical diagnosis you need. Self-diagnosis - bad road to travel....

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“From each, according to his ability; to each, according to his need” 1875 K Marx

I have been posting for a few days as I am out of my country (America) in a place with very limited medical services. I am trying to make arrangements to get back, but it may be another 10 days.

Summary - I am poz for 6 months, extremely healthy, UD, and had one anal receptive BB experience 30 days ago, where he did NOT ejaculate inside of me.

I started with herpes symptoms about 14 days ago. Got on Valtrex 8 days ago and the Herpes is almost totally gone.

I have now become convinced, however, that something else is going on, because the more the Herpes clears, the worse I am feeling. I have joint and muscle pain, low fever (not high), and have had 2 nights of mild night sweats, and in general, just do not feel "right" - but again - this is AFTER starting the Valtrex and is getting WORSE as time goes on. Before Valtrex the ONLY symptom I had was the 4 herpes sores on my ass.

I am of course freaking out - and I realize none of you can diagnose me or anything. But I am massively scared about three things, in the following order of "scared".

HIV Re-infection / Superinfection - everyone on here says "no way" it is basically extremely, extremely rare, but there are a LOT of reputable articles saying otherwise. Has anyone here ever been re-infected / superinfected or walked closely with someone who has been?

Hep C - Again - I guess this would have had to be in his pre-cum because there was no ejaculate and certainly no blood....BUT??

Neuro-syphilis - I have tested negative on test for syphilis, but the doc said it was early for the test (25 days) and the one I tested neg on was the less sensitive test. They are sending the blood out for a more sensitive test but results will take 7-10 days down here. The reason for the neuro-syphilis concern is that there is one "herpes" sore that is taking much longer to heal, and the symptoms could possibly point to a fast acting neuro-syphilis, which they are finding is possible now at any stage - not only late stages - if you are HIV poz.

I am trying - so hard - to remember that I may just have a bad cold, or the flu, or whatever....but the decisions are hard...do I cut short a 3 month trip and return home just to seek medical evaluation that will tell me I am fine? Go to another larger city down here with medical services that still won't be USA standards and probably have to pay for them out of pocket or fight with my insurance company, etc...I will wrestle through those decisions, but if some of you - especially the longer term folks or the more recent ones who really study a lot of this could weigh in on this, I would really, really appreciate it so much. More than you know.

Steve buddy , I know your upset but there is no need in multiple threads about the same issue . I have merged all 3 of your threads into one . I have already asked you once before to do this for me / us so please cut me a break and only post in this one thread about your concerns ,Thanks .

OK - I guess I don't realize how this should work. My concern now is more for the Superinfection / Reinfection or HEP-C, which is not what this has as its subject. My concern is for those because the first Syphilis test came back Neg, so, there is at least a 60% chance it is not that. So, that's why I went with the different Subject line - I feel like the subject has changed. But you are the boss.

Beyond that - can you give any advice or suggest some people who might be able to?

Since your first day here your posts have read like an emergency "PLEASE RESPOND" and please helps over and over.

You have some issues and may have indeed contracted herpes or syphilis or maybe another std. You need to go to a doctor and get checked. Diagnosing yourself on the internet or by strangers on the internet is stupid. Even so, people here have given you very reasonable and smart responses and your reaction had been no it must be superinfection. So at this point there isn't much else to add. No one here thinks you have superinfection. And jumping to Neuro syphilis straight away isn't beneficial either.

A bigger question is why are you having unprotected anal sex with strangers? You have HIV and you can't be doing shit that puts you at risk for an std our syphilis. Syphilis is hiv infected people sucks and you are putting yourself at risk. You should be working on why this happened with a shrink and getting this anxiety/obsessive disorder treated.

So sorry to be an ass but when you were first diagnosed we spoke by pm and I thought you were doing pretty well. It just doesn't seem like that anymore. We are here to help and talk anything but this seems more anxiety obsessive disorder related.

I cannot help in regard to syphilis, no experience and no clear idea...

But in regard to medecine in Southamerica, I can tell you that things have changed. Well, it depends where you are, for sure... In the case you are in Ecuador, please send me a PM, I can give you some good addresses, I´ve been treated for two years there and now I´m in Canada, my new doc told me my case had been very very well managed. Many doctors there are also studying outside...

Also, docs there are much more cheaper tan in US and they usually are opened mind...

Try to relax and stop using internet to diagnostic by yourself, it hurts the mind and don´t cure anything...

I'd like to point out a few things I've learned over the past few days, in the off chance that this will be helpful to someone.

First off, the issue of re-infection or super-infection is not extremely rare or even rare. The very best journals are now reporting that re-infection / super-infection has approximately the same rate of transmission as initial infection. So, it is as easy to get re/super infected as it was to get infected. Simply Google hiv superinfection / reinfection and there are several recent, scholarly articles regarding this.

Secondly, neurosyphillis is NOT something not to worry about because it is only "late stage" and takes forever to progress. They have found that for some reason, in HIVpoz people, neurosyphillis is able to travel to the brain / CNS within a matter of months. Someone on this site explained that this exact thing had happened to them. See above.

It seems different people have different expectations from this site. I was under the impression it is a place for those of us living with this disease to share information in "real time", since this is a complex and constantly changing field, and I don't know about anyone else, but it is hard to get everything sorted out in a 20 minute Dr's appointment every 60 or 90 days.

I have exactly TWICE had "anxiety" online....once, five months ago for the first few weeks after I was diagnosed with this life altering illness. And the second, now, when I am hours away from any significant city, and need to decide if what is going on is worth flying back to America for or not.

Ah. So you have to dig into the depths of the National Institute of Allergy and Infectious Diseases in Uganda for a scientist's interview to affirm your notions about superinfection.

Also, you quoted an abstract in the Lancet article, not the study itself. I would really like to read that, as it contradicts EVERYTHING the statistical epidemiology has thus far been reporting.

Honestly, looks like you are seeking an argument to bolster your own opinions. I regret having taken the time to PM you the other day, as it apparently did nothing to help, assure or inform you.

Here's a tip: If you believe in the spectre of superinfection, and believe you are a condidate, why not demand testing to confirm or deny your exact HIV resistance profile?

Also, if you are so afraid of superinfection, then why don't you wear condoms?

These last posts were a slap in the face to my PM the other day - and after YOU thanked ME for being nice to you. Might want to consider reciprocating that from time to time.

Bottom line is, I have been studying this illness in an official capacity on this forum for over ten years, and ran a non-profit for six years prior to that. Dr. Ho trumpeted the advent of a new tide of resistant infections due to Superinfection over a decade ago, and to date this emergence has not occured.

Yes, I progressed quickly from initial syphilis to neurosyphilis. I had bery lot cd4 cells and likely had a high viral load as well. That shit happens. If you are concerned about that, then order a spinal tap.

But I am afraid I have less patience for this drama than I did three days ago, and respectfully bow out of this thread before I make a comment I absolutely will regret.*

*To be clear, I would regret the consequences of the comment(s).

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

SteveS - really dear stop self diagnosing. Yes, the solution for you is to GO GET AN EXPERT medical opinion on your concerns.... Go do that in a city where you are or come back home. You are in a funk and suffering both emotionally and physically. I can't understand why you would sit in the boondocks another day. Unless you enjoy the turmoil.. Is that the case? Isolation is compounding the anxiety. Not only are you worried about worst case scenario infections (anxiety!!) you can't even get an expert (double anxiety!!). Whats the point of that?

If you don't like mysteries, just move your healing behind and go to where you can get answers.

Go home. Go back to your daily routine. And over the next weeks, get your medical mysteries solved...

Life is long. When you are feeling healthy and mentally calm, you can travel again...

You realise, anxiety alone, and the recent suspected herpes infection, could be enough for your whole body to be seized, achy, etc....

Every far-fetched diagnosis you are worried about is treatable, so whats the point of suffering in ignorance... And you'll probably find its no big deal when you get answers...

Take your mind off this spiral.... Get back to routine life and get on with it.

I agree with others. There is an mental health challenge here. Anxiety run amok, self-diagnosing, obsessing on internet research, hypochondria....

« Last Edit: October 03, 2013, 06:43:34 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Staging with syphilis in HIV doesn't really work. The old stages (and treatment protocols) are from the pre-HIV era. Basically, you need aggressive treatment and followup if you do test positive for syphilis, but you haven't. RPR is a very good test for recent syphilis infection.